European Experts meet in Barcelona to improve the use of Health- Related Quality of Life instruments in the clinical practice.
The Barcelona Biomedical Research Park (PRBB) hosts BiblioPRO’s II Scientific Meeting regarding the use of Health-Related Quality of Life instruments.
The exponential growth of Health-Related Quality of Life instruments in the new digital technologies era raises doubts regarding their access, favouring problems due to illegal uses.
The international legal regulation regarding copyright has significant ambiguities in its application to Health-Related Quality of Life instruments.
Experts recommend the access to these instruments through centralized distribution database websites such as PROQOLID or BiblioPRO.
The systematic use of these measures by the National Health System (NHS) in the United Kingdom, showed that procedures such as inguinal hernia, 20% of men had no symptoms before surgery. Additionally, 85% showed discomfort after the intervention. These data have been useful to question the need of expending 50 million pounds in some of these procedures.
February 20th 2015, Barcelona
BiblioPRO’s II Scientific Meeting was held on February 19th regarding the use of Health-Related Quality of Life instruments and Patient Reported Outcomes (PROs). It was organized by BiblioPRO’s scientific committee and the Hospital del Mar Medical Research Institute (IMIM).
European experts in Health-Related Quality of Life instruments participated in the Meeting. Paul Kind, professor of the University of Leeds, and Caroline Anfray, of the MAPI institute (Lyon), discussed about quality of life and the copyright of PRO instruments.
Health-Related Quality of Life instruments and Patient Reported Outcomes (PROs) have developed exponentially during the last decades, both in medical research and clinical practice, at a national and international level, becoming significant indicators of health and quality of life in medical research and epidemiology. Patient-reported health outcomes have an important predictive power for results such as mortality, service demand and health costs.
That is why a group of experts led by the Hospital del Mar Medical Research Institute (IMIM) set up the first Spanish virtual library of PROs in 2005 which is free and open access (BiblioPRO), which currently has an average of 45,500 visits per year.
The II meeting’s programme, in which 152 participants attended the meeting while more than 150 people followed online, via streaming, had also parallel scientific sessions related to specific areas as well as the presentation of posters with the state of the art regarding quality of life measurement of diseases with a growing interest, such as cancer, neurological diseases and chronic disorders.
In addition, an onsite and online training workshop took place the day before the meeting. It was addressed to about twenty professionals who were interested in knowing and applying the EMPRO tool, an instrument developed by members of the Scientific Committee that evaluates in a standardized way the quality of this type of instruments.
BiblioPRO is the first virtual library in the world specialized in Health-Related Quality of Life instruments and PRO, in Spanish, which are organized and documented following a conceptual and rigorous classification. It not only includes the instruments originally designed in Spanish, but also cultural adaptations developed for Spain and Latin America, since most of these instruments have been developed in Anglo-Saxon countries. The correct use of these instruments is necessary in very different situations, and allows performing a better detection and monitoring of the evaluated health status.
This virtual library is of free and open access and it contains all the basic information (name, disease, original author and adaptation author details, measure type, population, age, etc.) of 748 questionnaires (soon, more than 1400). Its objective is to promote a correct use in research, by offering exhaustive online information, evidence-based assessments and specific training within this field. BiblioPRO also aims to identify the highest number of existing instruments to evaluate health outcomes, helping to select the most adequate one through a scientific methodology, always guaranteeing intellectual property rights and all the legal requirements.
For further information:
- On the meeting: http://www.bibliopro.org/servicios/serviciosiijornadapresentacion.html
- Streaming: http://bambuser.com/channel/BiblioPRO
Caroline Anfray - Business Development Director, Mapi Group